Splendid Mayhem: June 2010

Welcome To Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Tuesday, June 1, 2010

Information About Mitochondrial Disease

Since I seem to have some "down time", I have added information in the side bars about Logen's "main" disease- Mitochondrial Disease. I plan on posting about What Mito is, etc soon. Just wanted to point out the links on the side.

Hospital Update

Swollen Hand/Arm from IV Infiltration
It' s been nearly a week, and I'm still (not) enjoying all the amentities of the hospital. Vomit. I feel worse than when I came in last Wednesday, no big surprise.

We've brought in a GI Doc. I did a small bowel study on Saturday. Endured "GoLytely" on Sunday and (at 25) had a colonoscopy yesterday. The only thing we found, is that the barium from the bowel study is still there, we will have to repeat the colonoscopy in a few weeks.

I developed a fever Saturday evening, it's low grade. It's still hanging around and all of my labs look normal. An Infection Control Specialist is coming in to see me today.

And, since "constipation/bowel issues" have been ruled out for the root of my abdominal pain, we've called OB. He should be in after hours tonight. GI thinks we should do another laperoscopy (my last was in 2005) b/c he could get a look at what he wants to.

It's been a heck of a stay! I've had 2 IVs infiltrate. It took 4 nurses and 10 sticks to get a new one started on Sunday and today 2 sticks so far, I still don't have one in- they are paging an ER nurse (I told them we aren't doing 10 sticks today, I refuse!). We made a formal complaint about the level of care/response time provided by the nurses, it's been horrible. The Director spoke with me this morning, and it's been better since.